How I achieve a complete life with pain My pain journey
In this post
Get to know me
My name is Berenice, (Bee) and I suffer from chronic pain. (That sounds like the start of an AA group.)
This is personal and very real. I also know many thousands of people are suffering from pain and feel isolated, angry, grieving, alone and more.
My pain started when I was around 10 years old.
If this is you please know you are not alone!
This is my story and I want to help support people like me.
We are all different and have different pain feelings and different stories, this doesn’t make you any less important!
Where is my pain?
I always laugh when a doctor or consultant asks ‘where is your pain?”
Describing where my pain is tricky as it can ‘move’ as strange as that sounds.
In general, it is mostly in my knees and feet but it sometimes affects my legs, hips, back, right side of my jaw and right elbow.
The pain in my feet is different from the pain in my knees.
For a long time, I had a separate diagnosis for my feet, Mitchel’s Disease.
Now we understand it is the same condition. Complex Regional Pain Syndrome.
The weird thing is this diagnosis typically shows different symptoms to the rest of my body, which makes my case even more unusual.
My feet feel like they are on fire all the time even when they are ice cold (although the word ‘fire’ does not give it justice)
In my feet, I also have intense pins and needles, throbbing, colour changing and what I would describe as an achy pain in my heels.
At night in the summer, I have to wear cooling socks due to the heat.
The heat only increases that agonizing burning in my feet, I don’t sleep well because of this as you can imagine.
In the winter my feet are always cold and will look blue and purple.
But they are still on fire, even heat from a warm bath is unbearable because it feels like boiling water.
In my knees, I get constant pressure, throbbing, pins and needles and an intense dull ache.
My knees are incredibly sensitive to touch from people, clothing and bumps. Sometimes the act of someone walking around the room can spike my pain levels up as I can feel the vibrations.
I also have spasms and shooting pains that make me scream out along with my knees giving way on me and I am unable to walk. This makes me feel nauseous and sometimes vomit when my pain levels are very high.
Another condition I have is Restless Leg Syndrome.
Which just adds to what I call discomfort but to anyone else they would call it suicidal pain.
This affects me all the time but mostly at night.
My pain story
No one knows what caused my chronic pain. I was fit and healthy. I had no injury, no twists or falls. It is a mystery.
I was an active child. A dancer, gymnast, footballer, and swimmer, loved sports and climbing trees.
When I was 6 I saw the show Fame and I was absolutely positive I was going to be a performer in the West End of London.
I belonged to performing schools and a dance school where we put shows on each year. I auditioned and performed in the West End London multiple times as well as local plays.
It was my dream and I was so passionate, I was always practising. My mother said I never complained about the pain. I just got on with it and despite my pain, I wasn’t going to let it ruin my dream, my future career.
I went to college to study performing arts and passed my first year top of my class.
When I was in primary school I would collapse. Then I would get taken to hospital where they checked me for injuries. I had MRI scans, X-rays and other examinations. All that was said was that I was young, so it must be growing pains.
I was told I would grow out of it.
I did not grow out of it.
As a teen, I did complain more. Maybe the added hormones and feeling frustrated got to me. I couldn’t do what I wanted without such immense pain.
For years I saw different doctors and consultants. Each time they would do blood tests, scans, acupuncture, TENS machines, therapy and Physio. No one could tell me what was wrong.
All the tests and scans showed my body was as it should be. A strong, healthy child.
All the while I was still doing my activities and sometimes stopping them as asked by my consultants. Sadly time and time again I was collapsing, and I ended up on crutches.
Even going for a walk with my family would end up with the same result an awful amount of pain.
In my second year of college, I quit my course without consulting my parents. They were devastated that I had given up on my dreams. Something my consultant said stuck in my head. “If you don’t stop, you will be in a wheelchair for the rest of your life”.
I couldn’t handle the pain or the thought of not being able to walk or dance anymore.
My pain never got any better.
Recently I learned that the consultant had no evidence to prove I could end up in a wheelchair. That breaks my heart to think I didn’t need to give up my life.
Treatments I tried
I had x-rays, MIR scans, physio, acupuncture, reiki, tens machine and many more treatments that never worked.
The constant appointments with my pain consultant and in and out of hospital on crutches took up the majority of our family life.
I ended up being told if I didn’t stop all my physical activity then I would be in a wheelchair for the rest of my life.
Frustratingly what I didn’t know then was that this was not based on anything concrete because NOBODY knew what was causing this intense pain!
But being young and wanting this pain to end I did as I was told.
I left college and stopped everything but sadly nothing changed. This felt like the end of my life.
My mental health suffered too, I had therapy with no luck and that’s how my life continued.
Constant agony, not being able to get on the floor to play with my children, not being able to run, not being able to walk far or stand without the pain increasing.
People ask what’s wrong and I say I don’t know.
This made me feel heartbroken and maybe I was making it up, maybe there wasn’t anything wrong with me.
I was doing the same behaviours that caused the same issues and flare-ups time and time again.
Having to have more of the same tests and over and over again being told there isn’t anything wrong, nothing they can do for me. I hit depressive episodes time after time.
I stopped looking for answers and found ways to cope with the pain.
Later in life
When I was 32 years old, our family of 4 bought our first home.
We worked so hard to get out of debt and save to get on the property ladder.
I have had a lot of therapy due to depression and other mental health problems.
My therapist encouraged me to try again to find some answers.
I went to my new doctor’s surgery and started all over again. No surprise all the same tests were done and still the same results.
My results all showed that my skeleton, muscles, and ligaments are all in perfect, healthy, strong condition. Nothing out of the ordinary.
Only this time I had a doctor who was fascinated by my case.
We spent a lot of time talking and doing more tests on things I hadn’t had before.
He was also the first person to offer me any form of painkiller and medication.
This alone has massively improved my life.
Two years on I got a call from him one morning for me to come in.
He told me he believes I have Complex Regional Pain Syndrome.
We have a good relationship and he knows I am an expert in my pain.
He always says, “Don’t take my word for it, go and do your own research and then we can talk about it”
Unfortunately, there isn’t a cure (he was desperate to find me one) all I can do is manage the pain.
My doctor is still trying to help me.
He sometimes calls and says, “I’ve seen this experimental treatment, here’s the information, let me know what you think”.
I hate that I can’t run around with my children or jump, kneel, dance or stand for very long.
Sometimes I can’t even get up the stairs, get dressed or get out of bed.
How has my pain affected others?
I don’t often tell people I have CRPS unless I feel I need to.
I don’t feel people really understand what I go through on a daily basis.
Even my husband and children forget I am in constant pain every single day.
This isn’t their fault.
I just don’t air my pain all the time.
My husband and my children are very supportive of my pain and my condition.
I share my thoughts, feelings and plans for my day with them.
We have discussed as a family what they can do to help me when I have a flare-up or even on a daily basis.
This helps them feel like they can do something to help.
When I have a flare-up, they can get things from my flare-up kit.
A book, cuddles from them, socks, put candles on and help me walk to the bathroom, get me a drink or a snack.
If I am honest it is embarrassing and heartbreaking.
Asking my children for help getting dressed and helping me walk is hard.
This is a lot to ask of young children and for a long time, I did it alone as best I could.
That’s just who I am.
I have learned that I need help and it is okay to ask.
My children help with daily tasks. They do the dishwasher, helping with the washing, watering the garden and taking care of our pets.
What does the future hold?
I have overcome so much in 25 years.
There are so many conditions that fit into chronic pain.
Some severe conditions don’t seem to get justice with the name ‘chronic pain’ added to it.
When I say to people “I have chronic pain”, they often respond with “Oh poor you, hope you get better soon”
If I say “I have CRPS” and possibly explain what that is, I get a response that matches the severity of my condition.
For most of my life, I didn’t have a diagnosis so all I could say was “I have chronic pain”.
The use of meditation, medication, exercise, pacing, relaxation and so much more has helped me manage my pain.
Actually focusing on my pain helps me understand it.
That sounds strange but I used to ignore it, make myself think it might go away or perhaps it wasn’t real or as bad as I thought.
By using mindfulness, meditation and pain management therapy, I have learned more about myself and how I view my pain.
Along with my medication, pacing, knowing my limits and sharing my plans and pain with my loved ones help them to help me.
Some days I can’t make it better and I have to ride the wave until the sun comes out again.
My advice?
Don’t give up!
As corny as this sounds, you are not alone.
There is a lot of community support via social media and websites.
Let your family know what’s going on, they care and want to help.
If you are like me, very independent that can be hard but you can’t do this alone and nor should you.
I have learned not to take what doctors and consultants say as gospel but to do your own research and trust your gut.
Helping people learn to pace and come to terms with their lives is important to me.
I want and try to help others make their life happier and feel like they can have a fulfilled life.
I am not special. There are thousands of people suffering from chronic pain.
I do see myself as a fortunate person because it could be worse.
At the same time, I want people who resonate with my story to know it’s not in your head.
It doesn’t matter what the scans or consultants say and do, never give up looking for answers.
If we continue to fight for answers then we help the progression of science.
People like me suffer and fight so that other people may get answers to their pain.
Thank you
Thank you for reading my very lengthy pain journey.
You have no idea how much it means to me.
Please contact me if you have any questions.
Join me on this journey.
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